This project sought to describe provider- and parent-identified needs and barriers to obtaining home- and community-based services (HCBS) for children with disability (CWD) and to determine ways pediatric health care institutions can improve access to HCBS services.

In this exploratory sequential mixed methods evaluation, semi-structured interviews and focus groups were conducted with multidisciplinary providers and staff from an independent children’s hospital, followed by a survey of English and Spanish-speaking parents of CWD. Data from interviews and surveys were then triangulated for overarching common themes regarding how pediatric health care institutions can better support access to HCBS.

Among 382 parent respondents, 74.1% reported that their child needed a HCBS, most commonly physical/occupational/speech therapies, school-based support, and case management services. Two-thirds of parents reported at least one barrier to accessing HCBS and one-third experience >3 barriers. While multiple current institutional strengths were noted, internal weaknesses included lack of provider knowledge, staffing difficulties, and lack of protocols for identifying and tracking patients needing or receiving HCBS. External threats included requirements to entry for HCBS and transfer of care, with opportunities for improvement involving dissemination of information, funding support, and connection between providers/support staff and services.

Parents of CWD identified HCBS as necessary for the health of this population, but multiple barriers to HCBS were identified by both parents and providers. Multiple internal and external opportunities for improvement relative to pediatric health care institutions were identified, suggesting a need for a comprehensive approach to ensure that CWD receive necessary HCBS.